kvolland

Krassi –
I agree the Chloraseptic is awful…..there are lozenges you can suck on that work pretty good. The other thing that you might think about is if she has an thrush infection. It might not be evident in her mouth but could be in her throat. There are a couple of medications that might work for that….prescription so talk to docs….Nystatin is the best. It can be either a swish and swallow or a lozenge that can be sucked on. My husband had it a couple of times to. Another thing that can help too is what we call Miracle Mouthwash which is compounded formula here. It is nasty to but it helps numb things up….usually has viscous lidocaine, liquid benadryl and often Maalox. Others have the Nystatin in it along with hydrocortisone. Every prescriber has their own recipe. My husband hated it but it helped with the burning he got during radiation.

KrisV

Dearest Krassi –
So sad the you have had to join this family. As has been said you will find a wealth of information from us. And yes this is a strange disease. My husband had been cancer free for almost 2 years after his surgery and it came back. He was gone 9 days after we knew for sure that it was back. Terrible.
As for the nausea I am not sure of medication names for you but I will tell you what I would suggest here and you can see if it’s being used. First line would be prochlorperazine then ondansetron. These should be given routinely such as every 6 hours or 8 hours whether she has nausea or not. Then there are other meds like Emend (arepitat) which is a little stronger but there are some restrictions for use with that. When my husband’s nausea was so bad during his radiation treatment we used lorazepam (Ativan) 1 mg every 4 hours to help….this made him sleep but usually if you are asleep you aren’t vomiting. Make sure that any things she eats or drinks (if she can) is soft, easily digestible with limited fat in it…..fluids are often easier to deal with.
If you feel that she is getting closer to the end it might be time to talk to the doctors about palliative care or hospice. The goal then becomes quality of life rather then quantity so all they are dealing with is symptom control such as pain, nausea, shortness of breath. They can help with a lot of the problems she may have. We unfortunately did not get much of a benefit since it was such a short time.
Hope this helps.

KrisV

Izabella –
Welcome to this best family to support you through this. I am sorry that you are having to go through this. You will find this group will be able to assist you and your family navigate this.

You can do a search of the posts but using the search button on the header. Targeted therapy would be looking at the genetic makeup of the tumor and see if there is a specific treatment targeting a mutation that you have like the BRAC or BRAC2 mutations…..they do this some with breast cancer and other cancers. It is an option to look into,

Good luck with everything and keep us posted.

Hugs,
KrisV

Erashid –
My husband had the same surgery. It took him probably 6 months or so to get back to normal. They do a lot of stuff in the belly when they do the surgery so it take a while for everything to become normal again.
The pain in the right should is the same type of pain that can be seen from gall bladder issues. I would suggest limiting fat in her diet and definitely talk about some sort of digestive enzyme to help break things down better. Also something like Gas-X….a simethicone product…..will help break up the gas bubbles and that may help with the pain. You may need to ask at the pharmacy to help find it but that might help.
As for the incision, scar tissue will often itch and can be very dry for a long time after surgery. I would suggest washing with soap and a very mild soap then apply a good moisturizing lotion to the area a couple times a day….something that might have Vitamin E in it.
Hope this helps and keep us posted.

KrisV

Fred –
Unfortunately infections can be a part of the process. My husband had three hospitalizations for sepsis (bacteria in his blood) after his resection. Once after his port was placed for chemo and then again after his first two rounds of chemo. There were two more times after that where I was able to keep him our of the hospital by starting antibiotics at home as soon as I notices symptoms. They never really figured out where it was coming from and everyone had their own ideas. The GI doc said it was from narrowing where the liver and the small intestine come together. He thought there was too much swelling which caused the bile to back up. He started Ursodial 300 mg twice daily for that….never were sure if it worked or not since he had two more episodes after that. They were sure it was his port finally so they pulled his port out and he did the bulk of his chemo without a port or PICC line.

As far as appetite goes, Mark’s was always terrible when he was sick with the sepsis. He would just pick at his food. We tried to stay with a more soft even liquid diet. He would drink a lot of protein shakes. Also sometimes food that is too warm or too cold can irritate the stomach so try stuff that is kind of room temp or lukewarm. Also small high protein meals…..we did the protein shakes with frozen fruit, a couple scoops of ice cream, protein powder, yogurt and a little milk. The other thing you can do is make jello and instead of adding cold water, add something like Ensure clear or another clear protein drink (IsoSource is another one). It adds quite a bit of protein and it’s also considered a fluid. Fluids are the most important.
Good luck and keep us posted.

KrisV

Dearest Maggie –
Welcome to the best family and really none of us want to be a part of it. Six days instead of six months is terrible to have to deal with something like this. I just lost my husband on April 30th to this disease. He had been diagnosed in May of 2013 and had surgery in June. Chemo then chemoradiation and he had been cancer free for two months shy of 2 years when suddenly it returned. It was found on a CT scan take for a totally different reason. Initially they thought it was something else. Then he had a biopsy on April 21st when we found for sure it was a metastatic cancer. I finally got someone to read the pathology report on the 27th and found it was the cc back. He passed on the 30th.
I am so very thankful that he went as quick as he did rather than suffered through so much pain and indignity. It does leave you wondering and saying “what if” for a long time afterwards. In encourage you and your family to still get in contact with your local hospice, even though he never utilized their services they will have support groups and such as needed.
And you dad can still help, make sure you complete the Patient Registry for him and you can even look into the Mayo study as they are looking for people who have the cc but also for people who do NOT. My husband’s entire family signed up for it and I made sure that the biopsy tissue from the last round was sent to the study.
We are always here.

Love and Hugs,
KrisV

Unfortunately it can happen….and as Marion said sometimes with little or no warning. My husband was hospitalized three times…..twice three days after chemo and once three days after his port was placed. Each time his heart rate would go up, he would run a temp and you could see him kind of fold in on himself. Each time massive antibiotics got. My guess (and just a guess but as a nurse and having been through this too) is that when they were doing the intervention radiology part of things to fix the bile leak they introduced bacteria to her blood and that is what caused the sepsis (Sepsis is bacteria in the blood). We never really found a definitive cause for my husband’s they wanted to blame it on scar tissue in his liver but that was never found for sure. There was probably a who cascade of things that contributed to it. When a person is that sick the liver (and the kidneys too) have to work harder so the stress of that and the recent surgery may have caused the elevated ammonia level.

Make sure she has the biliary emergency card. She can be transferred to another hospital if needed to give her more advanced care. My husband usually started out in our local hospital but he was always transferred to the cancer center right away…..at my insistence.

KrisV